[Congressional Record Volume 159, Number 181 (Thursday, December 19, 2013)]
[Senate]
[Page S9047]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
NATIONAL PEDIATRIC RESEARCH NETWORK ACT
Mr. WICKER. Mr. President, I wish to celebrate the passage of the
National Pediatric Research Network Act, a bipartisan piece of
legislation that was signed into law last month.
I wish to thank my colleague, Senator Sherrod Brown, for his
leadership on this issue. I was pleased to work with him on this
important initiative in the previous two Congresses.
The National Pediatric Research Network Act expands and enhances our
Nation's commitment to pediatric research by providing the
infrastructure that is needed to advance the field for decades to come.
To do so, the law includes training and support for early-career
investigators and authorizes the National Institutes of Health to
select a number of competitive pediatric research consortia. Each
consortium, comprised of multiple institutions, will focus on specific,
high-impact pediatric research, including basic, translational, and
clinical investigations.
In addition, the law specifically states that a subset of the
consortia must focus primarily on pediatric rare diseases.
Participating institutions are encouraged to coordinate with multi-site
clinical trials of pediatric patient populations. This will provide
needed support for the families of children suffering from rare
diseases, such as Duchenne muscular dystrophy, the most common fatal
genetic disorder diagnosed in childhood, and spinal muscular atrophy,
the leading genetic killer of children under the age of 2.
The National Pediatric Research Network Act's collaborative approach
allows us to rethink and improve the way pediatric research is
conducted. Shared resources among pediatric institutions help maximize
the government's return on investment and avoid duplication. Rather
than allocating additional funds at the taxpayers' expense, the law
seeks to accelerate treatments for pediatric diseases by emphasizing
collaboration and the efficient use of limited Federal resources.
I wish to thank the many families and organizations in Mississippi
and across the country that helped build the bipartisan support
necessary for passage of this bill, including Children's Healthcare of
Mississippi, FightSMA, Parent Project Muscular Dystrophy, the Coalition
for Pediatric Medical Research, Children's Hospital Association,
National Organization for Rare Disorders, National Down Syndrome
Society, the Federation of Pediatric Organizations, and the Kakkis
EveryLife Foundation.
Simply put, this law will result in an improved and coordinated NIH
pediatric research investment. This effort will help children across
our Nation overcome numerous devastating diseases and conditions. I
look forward to working with my colleagues to ensure the timely and
effective implementation of this law, and I will continue to fight for
the health and well-being of our children.
____________________